Validation of Race/Ethnicity and Transmission Mode in the U.S. HIV/AIDS Reporting System

From CDC National Prevention Information Network

August 18, 2003

Since 1981, the national HIV/AIDS reporting system (HARS) has provided data to track the progression of the AIDS epidemic, detect patterns of transmission, assess prevention programs, provide an epidemiological basis for planning, and allocate federal resources. Active evaluation of the quality of the data by CDC ensure that the objectives of the system are based on complete and accurate information.

HARS relies on medical record reviews by health care providers or trained health department personnel for completion of case reports. Validity studies have shown that accuracy and reliability vary according to the type of information and the diagnoses examined. To assess the accuracy of two HARS variables on which data are frequently stratified, the authors compared HARS data on race/ethnicity and transmission mode to self-reported data collected during a survey of people with AIDS.

Data from the AIDS Patient Survey (APS), a study conducted in Arizona, Colorado, Mississippi, Missouri, New Mexico, North Carolina, Oregon and Texas, were used. Because the APS data on race and transmission mode were collected and maintained independently from the HARS, the authors used these sources to assess concordance between the APS self-reporting and the HARS medical record review.

In the APS, questions about race and ethnicity were asked separately, and reporting multiple races was possible; in the HARS, race/ethnicity comprised mutually exclusive categories of white non-Hispanic, black non-Hispanic, Hispanic, Asian/Pacific Islander, and American Indian/Alaska Native. The authors combined categories in the APS, assigning persons self-reporting Hispanic ethnicity into the Hispanic category and all others to their self-reported racial category.

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In the HARS, persons reporting multiple modes of transmission were assigned to a hierarchy reflecting the most probable mode. In the APS, the mode of transmission was ascertained from a series of questions about risks for HIV acquisition; multiple reporting was possible. Therefore, APS questions were combined to reflect the HARS hierarchy.

Of 1,010 persons self-reporting white race, 999 (98.9 percent) were classified as white in the HARS. Of 633 persons self-reporting black race, 623 (98.4 percent) were classified as black in the HARS. Of 192 persons self-reporting Hispanic, 165 (86 percent) were so classified in the HARS. Agreement was lower among Asian/Pacific Islander and American Indian/Alaska Native (2 of 6; 33 percent), and 11 of 31 (35 percent) respectively.

Of 927 men self-reporting MSM, 92 percent were so classified in the HARS; of 168 men reporting IDU, 76 percent were so classified in the HARS; of 174 self-reporting MSM/IDU, 55 percent were so classified in the HARS, and an additional 40 percent were classified as either MSM or IDU but not both; of 302 men reporting HC, 29 percent were so classified in the HARS, and most of the remaining were classified as undetermined.

Of 135 women self-reporting HC, 77 percent were classified as HC in the HARS; of 75 women reporting IDU, 91 percent were so classified in the HARS. Of 108 women reporting Underdetermined/other risk, 29.6 percent were classified as undetermined/other and 63.9 percent as HC in the HARS.

Self-reported and AIDS surveillance system classification of race/ethnicity and transmission mode agreed well in larger groups. Agreement on race/ethnicity was very good for blacks and whites and good for Hispanics. The data from smaller groups and the HC groups had poorer agreement. The findings of high concordance of transmission mode among those reporting a mode other than HC are consistent with those of other studies. The authors concluded, "To get the best information for less-frequent race/ethnicity and transmission mode groups, we need multiple strategies, including medical record documentation, interviews, self-administered questionnaires, and matching data to other data sources that provide services to specified populations. These strategies will become increasingly important as the epidemic continues to shift to racial/ethnic minorities."

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